The Record: Before we get into the history itself, I would like to start with your own path. What first drew you to working on HIV and feminist activism?

My interest really grew out of work I was doing with harm-reduction organizations in the early 2000s. At that time, I noticed there was a sharp divide among feminists about how to think about questions surrounding prostitution and sex work. Those disagreements were not just theoretical—they shaped policy debates about public health, criminal law, and women’s rights.

At the same time, I was working with organizations addressing HIV. What struck me was that the history of HIV is also a history of activism. I became interested in telling a story about the epidemic that included feminist activism as a central part of that history.

You also spent time working internationally on HIV issues. How did those experiences shape your perspective?

They were especially important. I worked with organizations in the Caribbean that were advocating for sexual health and HIV services for women. I also spent time in South Africa working with the Planned Parenthood Association there.

A lot of that work involved community organizing, working with young people, supporting advocacy around reproductive health, and building networks of women living with HIV. Being in those spaces showed me how much of the response to HIV was driven by grassroots organizing rather than institutions. Those experiences helped me understand how activists were shaping policy and public health practice from the ground up.

At what point did you realize there was a larger historical story that needed to be told?

Originally, I was working on a project about activists advocating for women living with HIV. As I began researching it, I started digging into archives, things like meeting records, organizational documents, and activist publications.

What surprised me was how extensive those materials were. There was a whole movement organizing around women and HIV, but there was not a comprehensive history of it.

That realization changed the direction of my research. I began to see that the struggle to have women recognized within HIV policy and science was a major story that had never really been fully documented.

Why were women absent from the early narrative about HIV?

A big part of it was perception. Early in the epidemic there was a widespread belief that HIV primarily affected gay men. That kind of thinking shaped research priorities, policy responses, and even medical knowledge.

As a result, the experiences of women were frequently overlooked. Research studies often focused on male patients, and diagnostic frameworks were built around symptoms that were more common among men. While women were present in the epidemic from the beginning, they were not always visible to the institutions responding to it.

One of the most critical issues you write about is the AIDS case definition. Could you explain what that was and why it mattered?

The Centers for Disease Control created a list of specific conditions used to diagnose AIDS. If someone with HIV developed one of those conditions, they would receive an official AIDS diagnosis.

The problem was that many of the conditions on that list reflected symptoms that were common among men. Women often experienced different symptoms that weren’t included.

This had enormous consequences because the case definition was not just a medical guideline—it was also used to determine eligibility for government benefits and services. If a woman did not meet the official definition, she might not qualify for support even if she was extremely sick.

In your work you describe science itself becoming a site of political struggle during the epidemic. What do you mean by that?

During the AIDS crisis, many patients realized that the systems producing medical knowledge weren’t fully capturing their experiences. Clinical trials, for example, had historically excluded women. Feminist activists began arguing that women’s perspectives and experiences needed to be incorporated into research.

In that sense, activists weren’t just challenging policy. They were challenging the way scientific knowledge was being produced. They understood that if women were excluded from research, their needs would continue to be ignored in treatment and policy.

How did activists ultimately push for a change in the AIDS case definition?

The campaign brought together several different kinds of actors. Activists were paying close attention to how HIV was being discussed in medical and policy spaces.

At the same time, lawyers were seeing clients who were clearly very ill but could not qualify for benefits because they didn’t meet the official definition of AIDS.

Those two perspectives converged. Activists documented patterns of exclusion, while legal advocates highlighted the practical consequences for patients. When they began coordinating their efforts, they were able to build enough pressure to push for changes in policy.

Are there organizations that played a vital role in that movement but aren’t as widely recognized today?

There were many. One example is SisterLove in Atlanta, an organization led by Black women focusing on HIV in communities of color. Another is SisterSong, which works within the reproductive justice movement.

There were also organizations in New York that provided services for women living with HIV and advocated for policy change.

These groups were doing extraordinary work, but they’re less visible in historical accounts because they weren’t primarily operating through court cases. Much of their influence came through community organizing and advocacy.

Your research also explores debates within feminism about sex work. How did those debates intersect with HIV policy?

Beginning in the 1980s, feminists were deeply divided about how to conceptualize sex work. Some argued for a sex-positive perspective that emphasized agency and supported harm-reduction strategies. Others believed prostitution was inherently exploitative and pushed for stronger criminalization.

Those debates had real consequences for HIV policy. Public-health programs found that working directly with sex workers, providing condoms and health education for example, was an effective way to reduce HIV transmission.

But critics argued that those approaches normalized prostitution. That disagreement shaped policies around HIV prevention, trafficking, and international funding programs.

Looking at public health today, what learnings do you think we can draw from this history?

One lesson is that social movements can play a productive role in improving public health institutions. During the AIDS crisis, activists pushed medical and policy systems to become more inclusive and responsive.

They challenged assumptions, expanded research, and helped create policies that better reflected patients’ experiences. At the same time, the relationship between activism and science remains complicated. We’re seeing that today in debates about vaccines and public health authority.

But the history of AIDS activism shows that organized advocacy can help institutions adapt and improve.

After studying these movements so closely, how do you think about activism itself, especially women’s activism?

One of the most striking things is that many of the women involved didn’t start out thinking of themselves as activists. They became involved because they were confronting urgent problems in their own lives and communities.

Their participation reshaped how we think about expertise, politics, and agency. It shows that activism often emerges from unexpected places, and that those voices can fundamentally change public policy.